The Whitehouse

Met with Layla's specialist in Vancouver yesterday. She is new to BC children's from Washington DC. She is another one of those scientists who I love watching. As she studies Layla I can see the wheels turning in her head. She often takes breaks after I've answered a question to just be in her thoughts. I've found that these doctors tend to not be as good with the social aspect of their job but I have no less respect for them.. possibly more. I wish I was that smart. 
For the first time she told me of the undiagnosed disease program at the National Institute of Health (NIH) in Washington. This is where she used to work. She is going to refer and help us apply to have Layla accepted into the program. If accepted we will be invited to come stay at the NIH for about a week where they basically would just go hard in looking for a diagnosis. Instead of continuing slowly as appointments come available and we book them. For example, Layla's currently on the waitlist to get another MRI to see where her brain development is at. This is something that is super important for us to see how far she has come from a year ago when we were in the children's hospital in London. However, the waitlist is up to a year long, sadly. At the NIH, they would look at everything that has already been tested, of course, but likely retest some of these. They would do bloodwork, an MRI, EEG, EMGs.. anything they see fit, that might help with the diagnosis.. and we'd get the answers from these tests right away! No guarantees of diagnosis but it's got to be fairly high.. right? I mean, these are top of the line specialists with top of the line equipment.  
I'm so excited. We could finally get the answers we've been looking for, for so long. An idea of the future. An idea of how to best help my baby girl. So often I feel so helpless with her. She can't tell or point to where her pain is. And sometimes it's just neurological where there really is nothing I can do.. and that is so incredibly hard as a mom. All you want to do is take the pain away. If we can get more of an idea of what's going on in her brain, body, chemistry etc. I just feel like we'll only get positive results. Of course there is the chance we will get a very negative diagnosis... but we've been there. We've processed SMA, and in this medically fragile, unknown world we have to constantly process the thought of Layla possibly not being with us long. Or with us a long time while being 100% dependant on us. The uncertainty is worse than any diagnosis they might give.